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Friday, 2 September 2016

New and Old- Same Plot Different Child

It's been hard for me to write lately, for a number of reasons- some being mere practicalities, pure business. The harder thing to admit is the mixed emotional state similar to paralysis that being overwhelmed can lead to. These past two months have had such a contrast of highs and lows.

We moved to a new house in July. We are now living much closer to a hospital with a pediatric team and John is much closer to work. This has meant less commuting time for him and I even get to see him in the middle of the day when he comes home for lunch. The house we moved into is a bungalow on a very quiet street- perfect for Gideon. The only issue was that there was carpet all throughout the main floor. With Gideon's throwing up issues (vomit on carpet = ewwwww gross) and his mobility issues (walkers and carpet don't mix all that well), we decided to rip out the carpet and put down hardwood.... ourselves. And since we were redoing the floors, we thought we might as well take out the walls around the kitchen. We hired a contractor for that part. Unfortunately the contractor found aluminum wiring in our house. This resulted in some extensive electrical work and sealed the "do it ourselves" flooring to stay on budget.

Then a very sad thing happened.

Our dog Sprocket bit one of the contractors when he came downstairs while I was with the boys. She bit him on his heal and drew blood. I'm sure she was just being protective and that she was unsettled from all the banging and noise from upstairs. She was also still a little off because of the move to the new house. My nerves were a wreck. The contractors were very kind about it all. Because Gideon has so many different workers coming and going from the house, we made the very hard decision to give her up. We couldn't risk something like this happening again. She was adopted very quickly but that didn't make my heart feel any less broken. I had Sprocket for over 9 years. She was a wonderful companion and I still feel sad and miss her.

Gideon has been doing fairly well. So far the G-tube has been helping to keep him hydrated during his more intense vomiting stretches and we have avoided hospitalizations in both July and August. His fight with solids has still been a challenge. After his June admission, he refused to eat anything solid and would push the spoon away. The past two weeks have seen some progress. He has opened his moth for me a couple of times and he has been holding onto his spoon instead of just throwing it away. Gideon is also able to sit unassisted now.

Alexander, on the other hand, has not had such an easy go.

About three weeks ago, after dinner, Alexander suddenly vomited and went unresponsive. His eyes were open, he had a shallow breath and he was limp. I was sure he had a seizure. We called 911 and an ambulance came. My mom rushed over to take care of Gideon, while I went in the ambulance with Alex and John followed in the car. I kept calling Alexander's name. I tried to pull him out of it. There was nothing for me to do. I was holding it fairly together, until the ambulance attendant checked his pupils- and they did not respond. No movement. No dilation. There was nothing. That's when the panic really hit me.

The ambulance rushed through the city, lights and sirens No fever. Sugar levels were normal. What was going on? It felt like the blood was draining from my head and sitting in my stomach. We arrived at the hospital and he was still unresponsive. For 20 minutes he had been in this state.

And then, out of the air, he cried.

He screamed.

He yelled.

No words. No proper responses. It didn't feel like we were in the clear. Every so often he would drift. Like he was lost- gone to some other place inside his head. I'd call his name a couple of times and he would start to scream again. This lasted for a good 45 minutes. Then came the gibberish and single words repeated. Like a broken record, repeated rhythmically, mechanically.

Slowly the words were less rhythmic and more natural. Not as fluent as he normally is, but the words came and I felt more at ease. Still we had no answers. No reason. No cause. The lab work was normal. The xray was normal. The doctor had no explanation so he sent us home.

That night, Alexander vomited. It was so late and we were so tired. We cleaned things up and he slept in the bed with me while John slept on the couch. The next night, he vomited again while he was sleeping. A week later, he vomited again so I brought him in to the ER at 3 in the morning. I was anxious. Is the vomiting caused by the seizure? Why is he fine during the day? Why is he not complaining of feeling sick? No fever. Nothing in the lab work. "This is not something we will solve at 3:30am in the ER" as the doctor told me. After the forth vomit during his sleep, I made an appointment with the family doctor to get an EEG expedited. He had a sleep deprived EEG on Monday. Tuesday, he woke up in the night vomiting again.

Can a virus last 3 weeks? We haven't gotten any results yet from the EEG and I'm praying this is all just a virus gone wrong.

Anyway... we are all going to go to a Teddy bear picnic today and it's time to pack up the basket and blanket. Keep pressing on. Just keep swimming. Break through the paralysis.